Celft Journey Part 1

First of all let me start off by saying I am NOT a doctor and Im not uber smart. I will try to explain any information to the best of my ability.

Ok, now that that is out of the way it dawned on me that I never wrote a blog about when he was diagnosed, how it made me feel, what the future would hold, etc.... So, I guess I will give a little re-cap.

Let me say first of all that this was our HUGE surprise blessing baby. And by surprise, I mean OOPS. (if you are reading this precious Reid, you are so loved!!!) You see, our baby was only 5 months old when we got pregnant with this blessing. A 3rd baby was the furthest thing from our mind!

I went in for my 20 week ultrasound like I had done in my 2 other pregnancy's. Its kinda funny because I was about to cancel that one. You see, when I was 18 weeks pregnant I begged my Dr. to let me get an ultrasound cause I couldn't stand one more minute not knowing for sure if it were a boy or girl (I had done the urine test at 10 weeks, so I was pretty sure I was having a boy) Yup! It was another boy.  I called in and asked if they still wanted me to come to the 20 week. I wanted to cancel it because the wait at the Dr. office was always so long. I mean, I'm a healthy person....I should have a healthy baby and my other 2 were just fine.

J.R. didn't come with me to this one. I decided to take my Grandma so she could see the advances in ultrasounds. Thank God she was there. Now, I have probably been through 30 ultrasounds in my life between my 5 pregnancies so after about 10 min of looking at his head my heart started to sink. 10 more min. went by and I knew something was up. She kept saying things like, "I just want to see his cute face" We had probably been in the ultrasound room over 30 min by now. I started getting tears in my eyes and I remember looking over to my grandma and saying, "somethings not right"  She told me that she had to get a measurement before we could leave and she couldn't so we needed to go back into the waiting room and wait to be called in again.

We were called in and I told my Grandma to wait in the waiting room (we had Jax with us) This is where my world came crashing down. The doctor told me that our baby had a bilateral cleft lip and palate. She told me the damage looked pretty severe and there was a good chance he would be born deaf and need a feeding tube! (how in the world she could tell this by the ultrasound I have no idea) I was crying. I felt it was my fault. I didn't know anything about clefts so that's when I made the horrible mistake of getting online and looking at pictures.

The following weeks were spent in the perinatal office and getting level 2 ultrasounds. At one point the perinatologist told me that we  should do an amino that way we could consider terminating the pregnancy! ARE YOU KIDDING ME? I was 23 weeks pregnant I believe and that was NOT an option. Nor would had it been if I would have found out at 6 weeks!!!

So, thats half the story... I will write a second part that will include weeks leading up to birth and birth. For now, we have some exciting news!! I took Reid to his craniofacial doctor yesterday to let him know we were going to be losing our insurance. I wanted him to look at Reid, check him out and let me know when his next surgery would be and make sure it was ok if he wouldn't been seen for a few months or even a year  until we can get insurance. Also, I was starting to wonder if everything was ok with his pallet because food always comes out his nose (originally the told me he had a cleft palate then when he was born it looked intact) The Dr did see a pin size hole but he said he wouldn't be considered a cleft palate. They will fix the hole when they do his bone graft surgery when he is 5!!!! (the summer before kindergarten) Thats it!! Thats his next surgery!! You have to know how exciting this is because many cleft babies go through so many surgeries before they turn 5 and this is what we were expecting.

Now, one of the speech doctors did come in and say that the reason food might be coming out of his nose is because his uvula might not be long enough to create that seal against the back of the throat. She said we will be able to tell in a few months  if when he starts talking he talks through his nose (sounding kinda like a deaf person) If thats the case she will work with him and get it fixed. She also told me that even though I wont have insurance, call her for any questions and she will do the best she can helping me over the phone!

There will be major orthodontics work with him later in life, but not now. He has a gap in his top gum line and that is causing his teeth to come in kinda funny but it can all be corrected one day down the road.

Ok, last Dr. His ENT (ear nose and throat) he does have an appointment in May to see if he needs tubes in his ears (if we have insurance by then) and then we can go from there.

Other than that.....he is a perfectly happy and normal little 9 month old boy. I always forget he has a cleft. It seems like a lifetime ago that I was so scared and so worried. He is perfect in every way.